title: Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands.
abstract: OBJECTIVE
  To study psychological outcomes, knowledge, recall and understanding of test-results, satisfaction, and reproductive intentions among 97 Western and 46 non-Western participants in a unique preconceptional carrier screening study for both cystic fibrosis and hemoglobinopathies in a multiethnic population the Netherlands, in which a couple's eligibility for cystic fibrosis and/or hemoglobinopathies testing was based on both partners' ancestry.
  
  
  METHODS
  Questionnaires before and after pretest consultation, and 1 week and 3 months after receiving test-results. Three cystic fibrosis and seven hemoglobinopathy carriers were identified, but no carrier couples.
  
  
  RESULTS
  Overall, anxiety levels were low, knowledge improved after pretest consultation but decreased after 3 months. Ninety-four percent remembered their test-results. Western compared with non-Western participants had higher knowledge-scores and better understanding of test-results. None of the carriers felt less healthy, six felt relieved, and one felt disappointed. Four carriers were unaware of the residual risk of having an affected child. Participants intended to draw reproductive decisions from test-results, were satisfied, did not regret participation, and did not report major feelings of discrimination or stigmatization.
  
  
  CONCLUSIONS
  Similar to previous studies, no major adverse psychological effects were demonstrated among the Western and non-Western participants in this study, and they would draw reproductive decisions on test-results. No arguments for rejecting a combined offer of preconceptional ancestry-based cystic fibrosis and hemoglobinopathies carrier screening were found. An extensive implementation study should be carried out, in which understanding of test-results needs further attention, to investigate whether or not this type of screening should be implemented on a large scale in the Netherlands.
authors.affiliation: Department of Clinical Genetics, EMGO Institute, VU University Medical Center, Amsterdam, The Netherlands. p.lakeman@vumc.nl
authors.forename: Phillis
authors.initials: P
authors.lastname: Lakeman
authors.forename: Anne Marie C
authors.initials: AM
authors.lastname: Plass
authors.forename: Lidewij
authors.initials: L
authors.lastname: Henneman
authors.forename: Pieter D
authors.initials: PD
authors.lastname: Bezemer
authors.forename: Martina C
authors.initials: MC
authors.lastname: Cornel
authors.forename: Leo P
authors.initials: LP
authors.lastname: ten Kate
mesh_terms: D001294:Attitude to Health; D003550:Cystic Fibrosis / Q000235:genetics* / Q000523:psychology*; D005006:Ethnicity; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006453:Hemoglobinopathies / Q000235:genetics* / Q000523:psychology*; D006801:Humans; D008297:Male; D009426:Netherlands